Lots of the same.

My classes have been mostly filled with the most wonderful kids this year. I am ridiculously grateful for this as it could really have been a rough year. I have quite a few that I’ve taught before, which always makes me so happy, and some of them take classes on days I teach so I still get to hug their necks. It warms my heart seeing them excited to see me. I don’t think they realize I’m just as excited to see them.

Things seem to have shifted of late. I could try to pinpoint why, but I’m not really sure. I’m trying to just take everything in stride and see where it takes me, but all of this has left me sort of pulling back from here and my instagram, which I never thought would happen. Maybe it’s a good thing, I’m sure time will tell.

It no doubt ties in to health stuff. As I lay here on my bed typing this blog post, which is a culmination of many different ideas for posts over the last few weeks, I feel absolutely exhausted and overwhelmed at the thought of the upcoming week. This isn’t even with digging into the emotional toll this all actually has on me, but rather is just the surface, visible emotion.

I’m learning a lot about myself, which is a good thing, I just find it difficult to not feel guilty at not keeping up with all the ballet goodness as much as I used to. The opinions in my head get really hard on myself about how I worked so hard to build this up and now I’m not even fighting for it anymore. But how can I fight anymore than I do if even just the mundane, normal, day-to-day is more than I can realistically handle right now? I don’t know. I hope to figure it out. I love what I have found through dance and I appreciate you all more than I can say. I just feel a bit lost, I suppose.

I turned 30 last weekend, which began with me teaching 3 classes that Saturday. Many of the teachers take the day off if they teach on their birthday, or end up going out of town or something. I love teaching on my birthday. What better way is there to begin a new year than surrounded by kids who still think birthday’s are magical? I bring them cupcakes and their eyes light up with hopes for me and the new year. Not to mention adorable 3 year olds hugging my leg and saying “happy burfday” in their adorable speech impediment way of speaking. I don’t know how to handle birthdays. They make me feel awkward. So the past few years, and especially since I’ve started dancing, I try to take class or teach it every year. That way, I’m doing something I love, and also it fills the time and gets rid of awkward questions about my plans for the day.

It’s coming up on 7 years since I started dancing. This next week, actually. But do I really get to count the last year if I took a total of 4 classes the entire year, and wasn’t able to get all the way through any of them? Typing that sentence just broke me. Realizing that this thing I found and love so deeply and have fought for these past seven years is something I can hardly participate in anymore, knowing that nothing is certain in my future with this thing I cherish. It’s a lot to take in. (add in the guilt from the mind opinions, and it’s quite a doozy.)

Thank y’all for sticking with me through all of this. For loving me as a person and not just a dancer.

Nutcracker auditions were last weekend. I, obviously, couldn’t audition, but was asked back as a party parent, so I’ll at least be on stage again. I know standing on stage for Act 1 is going to hurt my back, and I’m not even sure if my shoe lift will fit in my character shoes.

Have I told y’all it’s only half of what I need? No?
Well it’s true. The lift in my shoe is 12mm, but apparently I need 24mm to be close to having my hips even when I walk. The problem with this is 24mm is FREAKING THICK so shoes don’t stay on with that much. My chiropractor is brainstorming ways handle this, but it’s possible I may have to special order shoes that have a left one with lift underneath. Hopefully I can find some that don’t look geriatric. In other health news, I managed to break my cane? I’m winning the granny life right now.

In other news, I have started finding time to write more, since sitting still is sometime I suck at but have to do now. Writing is (obviously) something I’m passionate about, and if you’re interested in the instagram account, it’s right here.

Hopefully I’ll have fun Nutcracker updates as December gets closer.

Love you guys


Oh, hi.

It’s been a minute.

Even then, I sat with just that first sentence for longer than I’d care to admit.

I wasn’t able to make any more classes past the one with Lindsi Dec like I was hoping to. My body was too exhausted to even try making it through a class, and I knew I needed to save up any bit of energy I had for the obligations I have before me.

Classes started August 20th. So far, they have been absolutely incredible. The kids I have are mostly dream children, and I have to ask myself what I did to get so lucky to have them. I’m very excited for the prospects of this year, although I am also on guard that I could still have many children added to my classes. Still, I think a wonderful tone has been set for the year, and I’m excited to see the progress these dancers make.

Life for me looks very different than it did this time last year. Heck, it looks different than it has ever before, really. My work load is “minimal” but also is all I can stand without extreme health repercussions. There are days that are easier to accept this than others. The difficult days have been so frequent that I’ve hardly even gotten on my ballet instagram to keep up with things. (For that I apologize.)

I used to see my friends on their go through an illness or injury that kept them from dancing for a bit and see them post that they wouldn’t be on because it was too difficult to see the reminders when they knew they couldn’t do that. I didn’t really understand it until these last three or so weeks.

I’m beginning to see, I think, that I’m really not going to be able to be who I used to be. I’ve been sick for years–literally half my life–but now that I have CFS, it’s put my life and my ambitions on hold and taken over. I see these people who are my age out there doing things that I so badly want to be doing, and I tell myself that I’m the only thing holding myself back and to go out there and do it, and then I realize that isn’t true. This illness holds me back, and to just push through it like I’m used to doing with obstacles is not only unwise, but literally threatens my quality of life, which is already way less than it used to be.

I try not to neglect the reality that I am still very lucky to be able to do as much as I do, and I want to make the most of it while I can, but I do have to come to terms with the fact that my life isn’t what it was, it isn’t what I dreamed it could be, and it’s all because of things I couldn’t control no matter how hard I try. And this isn’t something you can just learn once and be on with; it’s a many-faceted lesson that comes and goes in waves, smacking you in the face and leaving you in a puddle of tears when you least expect it.

I’m still trying to do as much as I can with my life while I have it, even if that looks differently than I expected. I’m trying to find ways to contribute to the world and those around me. I’m trying to extend myself the grace to be who I am now and the learning curve to figure out what all of this means for me. It’s a process.

This last year (since the hurricane) was one of uprooting the weeds that have been growing all my life, facing the monsters head on, and taking back my life. It’s looking as those this next year will be a sort of follow up as I fight to define why I’m even here and what my purpose is. As soon as I thought I had it figured out, it gets turned on it’s head and I’m left to start over.

But I’m still alive, and I’m still able to fight for this definition. These ailments don’t define me–I do. I still get that luxury to do so. I get to learn how to be so fully myself that nothing else matters. I’m one of the lucky ones.


I apologize in advance if my posts become less frequent. I’ll do my best to update when I have things of note to say. Unfortunately, having my ballet experiences quiet down means I have less and less to say that isn’t just repetitive words you’ve read a thousand times before. Hopefully around Nutcracker, I’ll have strokes of wisdom and all.

Life is weird. It’s one thing, then suddenly it’s not that anymore and you’re left to figure out what to do now.

Thanks for sticking around, y’all.

Summer Guest Teacher

Typically, at least once a summer, we’ll have a guest teacher come in to teach either during the studio’s intensive, or in the continuing classes between intensive and classes starting back up again.

This summer, we had Lindsi Dec from Pacific Northwest Ballet come in to teach class on Wednesday. She and her husband, Karel, were here two summers ago to teach classes, but it was in the morning intensive classes when I had to work so I missed them. I was so bummed. When I heard she was coming back this week, I was hoping that I wouldn’t have any random health complications like last week to keep me from being as fully present as I’m able to be.

Thankfully, my body kept it together, and I was able to attend.

I was a bit nervous going into it, as I tend to be with all new teachers. I find myself torn on if I should tell them that I’m impaired, for lack of better word, or if I should just roll with it and hope for the best. Recent days have taken away any of the guesswork on if I should say something, but part of me still wishes I could just pretend I’m “normal” and do my best and if I struggle maybe they’ll just assume I’m just not that great of a dancer and move on with life. *hah* More often then not, it’s the debate of how much I let on. Thankfully, friends of mine know Mrs. Lindsi and told me how kind and wonderful she is, so I felt enough confidence to shove aside the anxiety of it all and go. (Yesterday was a day full of facing these silly little anxiety induced things I avoid that hold me back from things I love, including going to a fun new coffee shop alone successfully, but more on that later I’m sure.)

There were already a few dancers there when I arrived about 15 minutes early. My friend and I assumed it would be a pretty big class since there was a guest teacher, and I was glad she suggested arriving with enough time to get a good spot at the barre because she was right. I decided to approach Mrs. Lindsi before class and just sort of get to the point of it. I think what I ended up saying was something to the effect of, “just wanted to let you know that I have a list of various impairments I don’t want to bore you with, but I’ll just be doing barre. So don’t be alarmed if I sit out center.” Of course, she was absolutely cool about it and even told me to modify whatever I needed to. It made me feel far more at ease about even being there, for which I was grateful.

I often find myself wishing I was a naturally confident person, that I didn’t second guess nearly everything or let anxiety try to whisper in my ear worries I never would have considered on my own, but that’s not me. My reality is that I deal with these things, I fight them, and sometimes they win, but that’s okay. I’m grateful for the days the battle falls in my favor, and super grateful for times when people are naturally kind in ways that sets my inner battle at ease. This was one of those times.

The next silly concern in my head was wondering if, in saying something, I would cause her to write me off as someone to pay attention in class. I didn’t take her to be someone who would do this, but often with teachers, especially in a big class, they’ll focus more on the ones that they feel or see will use the correction, or ones that are doing this for more than just funsies. I almost forgot to wonder this one, which is a weird sentence to type but makes sense in my head. Not that I wanted to wonder it, but I was sort of proud that I cared enough to wonder it, even though I’m slowly remembering that I don’t really have anything to strive for past my own drive to be better. There aren’t any roles to try for or anything to prove, really. I’m having to relearn where I belong in the world of dance, and it’s a multi layered thing I’m still discovering every day.

Like in Kansas, I was grateful I decided to do barre full out and sit out center, even though center is my favorite part. The way she did barre made me feel just as alive as center usually does, and didn’t have many if any of the steps or combinations that can stress me out with all the ways I have to compromise and modify. I was able, for the first time in a while, to simply do barre and mostly just worry about my performance and how much I was giving to it, rather than about what hurt or was cracking. Don’t get me wrong, my heart was flittering and my brain was deciding it was a good time to go dizzy and my lungs were not seeming to get enough air despite making sure I was breathing through the exercises (which I’m usually terrible at) but I don’t feel I focused on these as much as I usually do. My brain was clear enough to retain the combinations like I used to, leaving me feel confident enough to focus on my body’s abilities. It was refreshing.

I was excited when I noticed that Mrs. Lindsi was focusing on each dancer in turn throughout the combination. More than just a fleeting glance, she was correcting little things, and staying with the dancer until the correction was understood and implemented, being honest if it was close to correct but not quite there, while also making us all feel like we were freaking rock stars when we did things correctly. It was the perfect balance of correction and praise, leaving us striving to want to do more and learn more and try more, while also not feeling like we don’t have something to offer or like it all was too difficult to even try to strive for. I respected that.

There was a combination I was a bit concerned for that involved fondu’s. Typically, these are problematic for me with my uneven legs/hips/etc, causing pain in my knees and making things complex. I had just gotten a new shoe lift before class that I was trying out, and I was pleasantly surprised to find that it significantly helped in fondu’s specifically, giving me a more even platform to plie from and helping me start with even hips and build from there. Once I noticed this, I became less nervous about the combination as a whole, even though it was the one that contained a few parts I was less than confident in throughout due to said long list of ailments. Mrs. Lindsi walked by at that point and I noticed her look from the dancer in front of me, on to me. When she did so, she said, “Good! Nice!” and carried on. It wasn’t in a general way, I know she saw me and analyzed what I was doing before saying it. It made me feel so good, a sort of reward for facing all the anxieties today and giving my heart the little ballet burst it has been searching for for a while. I got another “good!” during a balance I didn’t think I would actually hold but did. I struggled more with balances since the shoe lift doesn’t go through to the ball of my foot, therefore leaving me to have to readjust things and figure it all out to stay stable, but also lifted.

We had an hour long barre, and I managed to make it through the entire thing. My back was hurting by the end of it, I’m sure largely in part to getting used to the new shoe lift as is common, and my heart was do it’s palpitating it likes to do, and my hands were shaking a bit, but overall I still had a minimal brain fog which I was grateful for. I stayed in class to watch center, which made me so wish I could be out there trying all the corrections she was saying, but also grateful to get to sit in and hear them, as well as see them implemented by my friends. Seeing the light in their eyes as they take a correction, apply it, and see positive results is something I cherish, knowing they are so proud of themselves in that moment and seeing their confidence build a notch. I’m proud of these little nuggets.

I hope to make at least one more class, maybe two, before fall starts up. I don’t know that I’ll be able to take classes then since they’ll start later, putting me home after 10pm, but I’m trying to find different alternatives. One of my dear instagram friends suggested a good barre video that’s lowkey on ailments but good on the body and heart that I want to get (once I have income again) so hopefully that will yield positive results.

I hope you all are doing really well and are striving to be the best version of yourself, wherever that finds you. You’re worth it.

It comes and goes in waves.

Today was the first class I’ve attempted to take since being in Kansas last month.

I was looking forward to it, grateful to know I still have some summer classes left to make it to before fall kicks in and they start too late for me to make.

I feel like every time I write these days, it’s after having a particularly difficult week. This week is no different. I’ve struggled with health stuff in ways I haven’t known in quite a long time, been dealt a new load of grief, and had to dig up some old emotions to let things heal. It’s been painful. All I could think about was just getting to class and being okay. Feeling the familiar rush that comes with flowing through Ballet and forgetting everything bothering me in the real world.

Except I forget that I don’t have that luxury like I used to. Don’t get me wrong, I’m truly grateful I can even step foot into a studio still. I don’t want to ever take that for granted. But today was another wave of the grief of adjusting to all this health crap that’s holding me back.

Those of you who don’t know me may not know I’ve known a lot of people to die in my life, and since I started dancing 6.5 years ago, the one thing to make me feel like something makes sense after the grief begins all over again is getting into a studio, recentering myself, and letting myself feel and express and lose myself to the music and movement. I lost someone else I love on Sunday, and not only am I learning how to actually let myself grieve, but I had the harsh reality that I can’t even make it through class right now slap me in the face. I went anyway, knowing I’ve felt terribly this week, knowing I wouldn’t be able to make it through the entire thing, knowing it might wear me out even more than I’ve already been fighting through this week, but I had to go–I had to try.

I was grateful. I was at the barre with some of my absolute favorite people, some I hadn’t seen in a while, some who are moving away, and some whom I’ve never actually danced with since they met me after I got too sick.

I had a few pretty rough waves of emotion during barre. Where I realized again that I’m not who I was even a year ago. That my body doesn’t let me do what I used to be able to do. That I can’t push through like I used to. That it’s not a matter of mind over matter. I hated knowing that his is probably as good as I’ll get now. I was angry at my heart for feeling like someone had a vice grip on it, at my back for the herniated disks hitting the nerves even in low arabesque, at my stomach for feeling so incredibly nauseous, at my muscles for screaming at me, at my hands for shaking, at my mind for not being able to hold focus long enough to retain the combinations I used to be so good at remembering.

I miss who I used to be. I miss being able to get through class with only my knees hurting. I miss the days when the only thing holding me back was my own determination

Then I look around me and see these wonderful friends Ballet has brought me. These kind people who love me exactly where I am, not for who I used to be. Friends who go deeper. I think of my friends in Kansas who I cherish. I think of all the wonderful things Ballet still gives me, even if I’m not who I used to be, even if I never will be that person again.

I miss Ballet as I used to know it. I miss the release it provided, I miss getting lost in it all. I’m a blubbering mess even writing this damn blog post. But that’s okay. It’s healthy, even. It’s something I need to learn to let myself be okay with.

A piece of me is missing, and I have to learn how to adjust to what life is like without it.

I’m hoping this will be easier once classes start up again and I’m teaching my babies. Just being around them makes me feel better, but also makes me feel like all isn’t lost. It’s a part of me I still have, and I’m grateful for that. I want to make the most of it while I still have it.

Okay, hopefully I have happier things to write soon. Thanks for coming along for the ride, even when it’s dark and not fun or whatever. There is a potential bright spot in the health field. I may have found a doctor that could actually hear me out and help me. We’ll see where it goes and of course I’ll keep you updated.

Kansas City Meet-Up

I’m currently visiting Kansas, where most of my family lives, and as I lay on the bed in the upstairs bedroom of my favorite Aunt’s house, my muscles ache and my body feels so heavy from the past few days with some of the most incredible Ballet friends I’ve ever gotten the chance to meet. (Jana said it best #onaballethigh)

We began planning the trip a few months ago when I realized two of my favorite adult ballet instagrammers lived near my family. There was a vague thought amongst my sister and I to make a trip to Kansas sometime this summer, so we began planning it. As we did so, this absolutely incredible Ballet meet up opportunity also came to life in such an incredible way.

Joanna, Hannah, Jana, Kristin, and I were all able to meet up over the span of three days to hang out, get to know each other, talk all things Ballet and adult Ballet, hear of each other’s projects and endeavors, and endlessly quote Mean Girls. Needless to say, hilarity ensued.

It started Sunday night, when we all actually met for the first time at dinner. Even from the first moment, everything felt comfortable. I think it says a lot of the quality of these ladies character to be able to get in a group of five and every single one be able to blend so seamlessly together. Never before have I been in a group of such kind, selfless, down to earth people as I was these past few days.

Jana has a successful YouTube channel, which is already linked on my resources tab (ballerinas by night) and she vlogged the trip as well, so please subscribe if you want the behind the scenes footage of all the shenanigans we got into.

Monday, we began at Joanna’s house for an incredible brunch, as well as mutual obsession over her cat, Caspian, who deserves his own special shout out for being so adorable. (Check out her book, Cantique on her website or Amazon.) From there, we were able to go to Eleve Dancewear downtown. I had been to their store once before, but this was my first time since they moved to their new location. It’s quite a bit larger, with absolutely lovely aesthetics. Seeing the Dancewear up close and being able to feel it and try on the different styles was really nice, as well as so helpful. It’s nice to see that their colors are true to what you see online, so you know that what you’re seeing is really what you’re getting.

That afternoon, Jana (who, if you didn’t know, Also happens to be a pretty baller photographer) did a photo shoot with each of us, which truly was special.

I had a moment I wasn’t really expecting while shooting where I realized that this really was the end of this part of my life. That I’ll still keep my shoes and probably play around with them here and there, but as for dancing in them and for sure performing, that chapter is officially closed. I got kinda choked up about it, but thankfully didn’t cry in front of all my new friends. The dream of being on pointe is what drove me to actually push through all the fears and anxieties of being a beginner. It was the seemingly odd dream I was chasing that started me on a ride I never thought I’d even have the opportunity to do. I thought getting pointe shoes was dreaming big–I had no idea. So to know that these past 6.5 years of Ballet has lead me to do so much in such a short amount of time, and that the fueling part of that fire is now behind me, you get a bit choked up. I was a bit frustrated at myself because I think I still forget my body can’t do what it used to be able to, even just a year ago. I’m sure this will be an ongoing battle for a bit. But Jana was so warm and made me feel nothing but comfortable. I knew she knew what she was doing, and she was really good at instructing us on what corrections to make. I automatically trusted her words and judgement. And honestly, what better way to close out such an incredible chapter of my life than being given the unimaginable opportunity to be shot by someone so incredible? To document this beautiful part of my life, surrounded by what have quickly become some of my dearest friends? I couldn’t have asked for more.

I loved, Also, getting to see my friends get their pictures taken. I can’t really explain what it’s like. That certain muse of a thing that draws us to in Ballet, that feeling that begs us to dance, that subtle voice in the back of our heads that encourages us to dream–seeing that embodied as they put on tutus and skirts and pointe shoes, floating through movements, knowing that this moment was being frozen in time, it really was special to watch. We all learned so much about ourselves and this pursuit of Ballet, and I’m so grateful for it.

This morning we took a class at Kansas City Ballet. (!!!) It was the absolutely perfect way to cap off this entire adventure.

The teacher was warm, and clearly knowledgeable. (And also really loved rond de jambes) I appreciated how well she was able to read the room and give combinations, and also how she would look dancers in the eye with intention, making sure each of us were set and following.

I was more than nervous, going into a place that’s completely new. I never really know what to say to teachers about the long list of things that are wrong with me. I used to avoid it and just push through and hope it wouldn’t get in the way, but now I don’t have that option. I have to speak up. I’m not very good at that. Thankfully, Joanna was kind and let the teacher know about our meet up and in that told her that I would have to modify. The teacher was so chill about it all, it made all the anxiety I was feeling melt away.

Even before the first plie, I was so grateful to be there. This is another experience I never could have even dreamed of doing. As she gave us our first combination, I felt a rush of peace as I realized that Ballet is, essentially, the same anywhere. I could be completely surrounded by unfamiliar, my world caving in around me, but if I can just get myself to a class, or even if I can just do one by myself, all of that fades to the background and I find myself centered, at least for a moment.

I wasn’t sure going into it if I would try and do a modified center, or just sit it out completely. I had made myself push through and stay for a few classes at home to try and gauge where I was endurance-wise, but still going into it couldn’t really tell where I was. As soon as class began, I decided to do a full out barre and sit out center. I know my heart wanted to do the whole thing, but I had to be realistic and do what was best. The last thing I wanted to do was to push myself too far and do something I would regret later.

Sitting out center also gave me a unique advantage. I couldn’t help but peek glances at my friends during barre, but even then I was having to focus so hard to keep my brain the least foggy as possible that I didn’t really get to see them dancing. It was so cool to be able to watch these people I know through pictures or videos they post on social media come to life. The little quirks and nuances we each have coming to life and painting the picture of who they are in shades unique to them. The way they held their arms, the tilt of their heads, the extension of their fingers. It really was a sight to behold.

Having followed along with barre videos Jana has on her YouTube channel, it was a bit surreal actually doing barre with her. It made me deal an instant peace, like there was a familiarity in this old friend of mine I had literally just met two days before. Getting to watch her in center was like watching grace embodied. She floats with such elegant lines and intention, striving to do her best, but not letting the effort be visible except in her exceptional dancing. The class was full of typical prodigies and ex professionals, but still my eyes would draw to her in her group.

I was able to stand next to Hannah at the barre, which I was super grateful for. We were on a wall that had windows looking down into one of the summer intensive classes, which made the moment even more surreal. I had seen some videos of a variation Hannah is working on on her own, but to be able to see her in a class was really special. She dances with a kindness I don’t know how fully to describe. It was as though watching her dance made me feel as though that sense of comfort I come to the studio to find, especially when things are rough, had been embodied in her dancing. I appreciated it so much.

Kristin is one of those types that when you see her dance, you automatically pin her as a pro. Nailing multiple turns and executing jumps with great precision, it could seem like she was just another “one of those.” Except that she wasn’t. She has this subtle beauty that set her apart from “those” and made her a true joy to watch. She was attentive to corrections others may just shove off, and even when you think there’s no way it could be done better than she had done it, she’d implement the general correction and be even better still. It truly was mind blowing.

Watching Joanna, even for a fleeting moment, it’s clear she is the type that just gets it. Her lines are precise and elegant, which just dooms anything else she does to be absolutely incredible. I found myself wishing so badly I could have my camera to capture the moments she was creating, completely letting the music flow through her as she embodied every note the pianist struck. If you didn’t know she had only been dancing as long as she had, you’d never guess it. You’d think she’d been in this most of her life with the way her technique seems flawless. Watching her was like watching a fairy dance among flowers, or fog on the top of a lake at sunrise. Getting to know her, I know that she has such a truly beautiful soul, and I believe her dancing effortlessly expresses that.

I, myself, pushed myself in the moments I did have, hoping to soak up every bit of this opportunity I was given. I was sweating before we even finished plies, which I joke about but haven’t actually done in a while. The combinations were good and detailed, making me feel like I can actually implement corrections is been given in classes before. I didn’t get any direct corrections this class, but I did get a head nod at a balance I miraculously held longer than I ever had, but she wouldn’t know that. Maybe it was the inspiration of the people surrounding me, maybe it was the effort I was putting into executing the movements correctly, I don’t know, but this class left my heart feeling so full, and I’m so grateful to have gotten to have this entire experience with these girls.

I find myself feeling like I used to when Mom would pick me up from summer camp now that it’s over. I want to stay on this high a little longer, but I know that reality is already knocking on my door. My hope is that I can carry these days and what I’ve learned in them with me and use them to hopefully be a better version of myself in my every day life.

I definitely need to journal, as there’s much held in my heart from these past few days. So many beautiful moments I want to remember for years to come. I wish I had taken more pictures, but i feel that just shows how great the company truly was.

Here are a few anyway, as well as Polaroid shenanigans.

(Thank you, girls, for sending me group pictures as well as others. And thank you all for being so lovely and hilarious and just absolutely wonderful. I appreciate y’all more than I’ll ever have words for. ❤️)

(Why are you so obsessed with me? And filtered water.)

Nice things.

This week has been a particularly rough one health-wise.

Nothing extreme, but I over did it early in the week and have been dragging since Monday morning. I’m still getting used to the fact that being chronically fatigued is my reality and figuring out where my boundaries lie, but even in that every day is different from the next. You’re never quite sure what you’re gonna get. Still, you can be wise and stick to your limits. I’m still trying to find mine, and thought that I could add in a short walk once a week before the day gets really hot, but it turned out to be too much for me. I’m sad about this, since walking is where I see the most and best results overall, but I’m trying to accept it and be grateful for all the things I can still do.

I have added in water aerobics twice a week with my friend Krista, which had been absolutely wonderful. We’re the youngest be at least 30 years, but we’re in with a pretty good group this summer. The instructor we have right now is in high school still (or just graduated? Something like that) and is from Krista’s Church. She is such a sweet heart and really makes the class feel comfortable.

I quickly made friends with the 85-year-old in the class, Charlene, as we compared rheumatologist experiences and which canes we liked and why. Another lady also chimed in advice on my back, which I was grateful for. It’s nice to be around “my people,” even if they are grandparents and great grandparents. Being able to talk with someone about all of this who legitimately gets it because they’re going through the same thing, and also doesn’t talk to me like I’m a dainty youngin’ but rather an equal, it’s been really nice. I’m also super grateful to have Krista along for this ride. We’re CFS-ers together!

Although it’s been difficult to deal my butt to the studio some days, I love it. It’s more than worth it, and I know it’s not taking anything from me to teach, but rather helping me not just melt I to my bed and disappear there. I want to stay as active as I can for as long as I can, and being in an environment where I actually like to go every day is really wonderful. Not to mention the kids.

This summer I have really lucked out with some wonderful kids. I only have one class (out of 8 a week) that is a challenging, but even then they’re great if I have my assistants to help me out. (They’re life savers, I tell ya.) my 3-5 year olds are absolutely precious, having random bursts where they run up to me and hug my leg before they take their turn across the floor, faces beaming.

One of them today had missed a class or two. She came in a little late, so she missed the beginning where we all say our names. As she’s standing in line she asks, “what’s your name?” To which I say, “I’m Miss Emilee.” She replies, “Oh. Miss Emilee? This class is really fun. I like it a lot and I’m glad I’m here.” This is about the moment I became a liquid state and melted right there on the floor. She’s one of the older ones, and I’m always a bit concerned in the Summer dynamic that my 5 year olds will get bored being with so many 3 year olds. I was so glad to know that she was having a great time and it didn’t feel too “baby-ish” for her.

I have two sisters that I teach on Tuesday’s, one in my 3-5 and one in my 6-8. It’s their first time in Ballet, but they fell in love with the move Leap and asked to join Ballet. Their mom is a classics pianist and decided to sign them up. They are absolutely precious and have been soaking up everything I show them, which warms my heart as a teacher. This past Tuesday, the oldest was giving me a million hugs after class, asked her mom if she could take a picture of us, told me she wanted to print it out and frame it, and asked if I could come over to her house and dance ballet with her. I absolutely love kids and their unapologetic love that just spills out of them.

Another mom was in the foyer, watching her daughter dance in the class after mine. As I went to walk back to the office, she stopped me and thanked me for being such a positive influence on these kids. She told me how much it meant to her to see all the kids love me so much and how important it is for them to have someone like that in their lives and how rare it seems to be. She told me how she wished she had it growing up and hopes her daughter can have that. I asked if I teach her daughter and she said no and pointed her out to me in class. I thanked her so much for her words and told her how I didn’t really have that growing up either, and when I’d see flashes of it I clung to it. How I remember how it felt having it in those moments, and if I can be that to any one of these girls than that is success to me.

But really, as much as I’m told I inspire these kids and mean so much to them, they inspire me and mean so much to me. They’re my grounding. Knowing that I matter, even to these tiny humans, is the greatest honor in my life. It makes the days where I don’t want to get out of bed because I’ve found myself too far in the “dark place” worth trying just one more time. To have the opportunity to get to be surrounded by these little ones 5 days a week gives my life so much meaning. I’m beyond grateful, there aren’t even words.

Ballet has given me more than I ever could have hoped or expected. To think that I almost didn’t take that first class absolutely blows my mind. My life would be nothing like what it is. I don’t know what I would be doing now that I’ve gotten sick and had to quit my full time job. I wouldn’t have most of the friends I have, I wouldn’t know so many of the incredible people I know. I wouldn’t have gained the perspectives I have gained from meeting so many wonderful people from so many different places all over the world. I hate to even imagine my life without Ballet.

I am so grateful, I can’t say it enough. And every day I still get to step foot Into that studio is a day I cherish.

Also, side note, that Mom definitely didn’t have to say these nice things to me. She could have just kept it to herself. But she said them, and I can’t tell you what it means to hear them. If you think something nice about someone, even if they’re a stranger, say them. You may never know what it means to them to hear it.

Begin. (Again.)

Monday began the classes for our studio’s summer session.

I taught my first class of three to five year olds. There were thirteen of them. I was alone.
It could have been so much worse, honestly, but I did have quite a few “talkers” in the class, so it was a bit like herding cats. I didn’t get near as far in class as I would have liked, but all the kids did do all the things I asked, so I’m calling it a win. Towards the end, our studio owner came in to check on me. (There was a long line of parents registering their kids, many of whom were in my class, and she had been helping with that for most of the class time.) I only had eight kids registered ahead of time, giving myself the false sense of comfort that this class wouldn’t be too crazy. *Insert maniacal laughing here*

When our studio owner came in, she only had to corral a kid or two, and reiterate the “No talking” rule a few times. At the end of class, she looked at me and told me she was impressed with how I handled the class. She even commented on it again the next day to some of the other teachers that were there. It really made me feel good to hear that I was holding my own, even when it was quite a challenge.

The ME/CFS has been pretty intense here the past couple of weeks. I haven’t been sleeping well at night, which only exacerbates the problem. I had to be up early to put the house I was dog sitting at in order before leaving to the next house I am currently dog sitting at, then babysit for a couple hours before teaching. All of this on a long day the day before, and having not caught up from the previous weekend still. The kids really do help lift my spirits, even if they can be a bit challenging. It gives me the sense that I matter. That I’m still able to do something worthwhile with my life, even if it’s in a way I never expected. I’m so incredibly grateful to still be well enough to teach so many tiny nuggets, having even a brief brush stroke in the tapestry of their story. I hope it is a bright one in the grand picture of their life.

After I taught my class, I stayed so I could attend the Adult Ballet class. I haven’t been able to take an entire ballet class for over a year, so I wasn’t really expecting much. My hope was to get through barre and see how things went and go from there.

I was nervous, to say the least. So much has changed in the past year since I became sick. I’m nowhere near the level I was before I had to quit so abruptly. Even if, for some reason, the chronic fatigue went away, I still have the herniated disks in my back that are hitting nerves to consider. Thankfully, the class consisted of a few familiar faces, greeting me and letting me know how much they’ve missed me this past year. I’m sure I complained and explained more than anyone cared to hear. I tend to talk when I’m nervous, as though explaining things will somehow make it easier to handle. I still haven’t figured out why I do this, but recognizing it is the first step, right?

I noticed immediately the difference the herniated disks make in my dancing. Grand Battements were lower than 45 degrees on one side, and even that still caused some discomfort. Rond de jambes were a bit painful, and holding my core and thinking about turn out put pressure on muscles I had forgotten were so important, causing various joints to feel a bit of pain. I modified quite a bit, grateful that Ms. Munro knew about everything that was going on and that I didn’t have to be afraid that she would come and adjust me into a position my body can no longer make anymore.

Even as I felt all the twinges and tweaks of pain from this new version of my body I’m still accepting, I felt something I had missed more than there are words for. That all encompassing feeling when you know you’re doing everything you’ve been training to do the last however many years you’ve been dancing (6.5 for me, if you include the last year of not dancing.) You feel your body in alignment and know that your head is tilting where it needs to as you move, eyes following the line of the movement. It’s the feeling we all live for, the same one that can overcome us when we are on stage and really take in the moment of everything we’ve worked so hard to achieve. This time, I wasn’t on stage. I was in the studio I have grown to know as my second home, surrounded by old friends and new, hearing my teacher call out the combinations as I held on to the same barre that has been there longer than I have. It was a moment I believe my soul has been longing for.

This past year has held more changes than I could have ever expected. Not only was I diagnosed with ME/CFS, I was also dropped by my doctor as a lost cause, unwilling to hear me out or dig deeper into what is causing all the other things that seem to line up with a diagnosis she wasn’t willing to give me (though she toed the line as close as she could.) I’ve had to try and sort out what this meant for my quality of life and what I needed to do to try and keep it from getting worse, with no help from medical professionals. A few months later, Hurricane Harvey came and barreled through my hometown, ten months post storm and my parents house still stands like a ruin, gutted and full of holes and mold, taunting us as we fight with insurance companies and contractors. It changed the entire demographic of everything familiar to me. Places I used to frequent just don’t exist anymore, friends that lived down the street just took the insurance pay out and left, starting over somewhere else. Landmarks and street signs and places that made the town feel familiar and safe were gone, some damaged beyond repair. Home looks different now. In all that, my illness became more severe, causing me to have to leave my good and steady job.

Life as I knew it is completely different now. The one thing that has been consistent is the dance studio, but even that has had to have some adjustment, simply because I’m not the person I used to be. I can’t do shows, so my weekend aren’t consumed with rehearsals like they used to be. I hardly see all the friends I’ve made in classes since I can’t attend anymore. Even the things that are familiar are different.

And even though dance as I know it is different, that feeling is still there, grounding me in ways I didn’t know were still possible.

To my surprise, my brain held up more than I was expecting. The fatigue was greatly evident, and my joints and muscles were protesting, but I was able to stay past barre, cautious though I was.

I still had to avoid any sort of petite allegro, and when we got to turns I realized it had been a solid year since I had done pirouettes, but I was there, I was able to participate.

This was the start of me beginning.


I know I more than likely won’t be able to continue into the school year, simply because the classes go later and it does take me about 40 minutes to drive home and the classes are on the nights before I’ll have to be up early. But it does make me feel good to know that it’s not something I have to fully give up on just yet. And honestly, even if my health still remains in decline, I think ballet is something that will remain in me, to some degree, even if it’s not as prominent as I would like.

I only ended up having to sit out the grand jete combination we did at the very end, which was such a pleasant surprise to me. My brain felt pretty cloudy afterwards, and my body was weak and sore already, but I wasn’t shaking like I had before. I didn’t have to sit around and wait before I felt like I could handle driving home. I had enough presence of mind to focus safely without worrying if I might do the odd sort of black out thing where I space so hard its as if I fell asleep with my eyes open.

Yesterday morning, I woke up feeling sufficiently exhausted from how much effort I used the day before, but in a weird way it also had a tinge of feeling rewarding. I’ll still have to find a balance, and realistically I’ll need to find other ways to stay active since ballet will more than likely be too exhaustive for me to keep up with as much as I’d like, but that’s okay. I still get to keep my toes in the water through teaching, which I am increasingly grateful for.

Since my chiropractor–the only medical professional to believe me to any degree–has let me know that becoming stagnant will cause my health to decrease more rapidly, I have done what I can to find ways to still remain mobile. I replaced my walking shoes that the hurricane claimed and have also signed up for a water aerobics class with my friend Krista, the first class being today. I could feel it in my bones, but I am hopeful for how much it will help strengthen everything that has been so neglected, and in a way that doesn’t cause as much strain on my joints. (Plus I’m so happy to have someone to do it with me.)

There are a few exciting things happening this month that I can’t wait to tell y’all about, so please stay tuned as they unfold and if you have instagram, follow there for updates on a giveaway that will be happening soon! If you’re a fellow dancer, you won’t want to miss this one.

Please appreciate this “Expectation vs. Reality photo set from class Monday 😂

Yeah, but.

The studio has been on a break since recital. We’ll reopen next week when I’ll be teaching 8 classes a week ranging in age from 3-8 years old. To say I am excited is a major understatement. I love these kids, and I’m looking forward to being around them all again.

In these weeks, I have been doing quite a bit of reevaluation. Summer means earlier class times, which means if I try to stay for adult ballet I can get home way earlier than 10 pm. A few of the mom’s of my students from this last year are going to be taking the Monday class and asked if I would be there. I want to at least try. Plus, there’s a class I’ll be taking in June that I want to be prepared for as much as I can. (I know I can’t control what my body does and how my energy levels are more than I’m already doing, but I can at least know where I am currently and know what I’m getting myself into.)


I miss being in ballet. I miss that rejuvenating exhaustion that comes from a long and exhausting class. I miss seeing little bits of progress. I miss making goals and reaching them. I miss being with my friends and seeing them improve. I miss challenging myself. I miss having goals to strive to achieve. I miss working to progress towards this silly little dream of mine, and feeling that sense of pride in myself that came in facing the fear of something new to make it happen.

I used to tell my mom when she would ask me how long I was going to do this ballet thing that I would dance until my legs fell off, and then find a way to keep dancing. To me, the worst thing I could think of was losing my legs. You can’t dance without legs, right? But I’ve heard of people making it happen with a prosthesis. I’ve seen people attend artEmotion’s adult ballet intensive in a wheelchair. Surely I could find a way to do this forever. But what happens when you don’t have the energy? What happens when your body works against you and makes it difficult to get out of bed? What happens when you get out of bed, but standing hurts? Or when you get tired so fast that by the time barre is over you can hardly form a sentence together and have to sit for 45 minutes before you can even think of driving home?

I’ve done my best to take time to really rest and reevaluate since quitting my job. To do a sort of trial and error to see how much I can tolerate and how much rest I need to function.

Obviously, I haven’t gotten to fully test this out with ballet yet, but I feel I can get a pretty good gauge of what it would cost me to stay for a class. But can I really? Will I ever get back to who I was before? Will I ever be able to stay for a full class again? Is this just the beginning of this illness as I know it? Is this the best I’ll ever be again?

The overwhelming fears began to creep in, as they’re so good at doing, accompanied by all the questions I nor anyone else have any answers to. How in the heck am I supposed to know what to do or how to do it? And what’s the point in trying if trying could potentially just make me worse off faster? Why try if success might not even be possible?

Since I don’t have work to report to, it’s made me more available for dog sitting. Memorial Day Weekend is notably a popular one for this and this year I have found myself in an absolutely wonderful home with the sweetest dogs. It’s been a good, safe place for me to really practice the things I need to do for myself to try and take care of myself the best I can. While being here, it’s safe to say I’ve watched a good amount of movies, one of them being Soul Surfer, a movie about the life of Bethany Hamilton, a girl my age who lost her arm in a shark attack. This seemed like an all but certain end to her budding surfing career, but she found a way to make a comeback as a pro surfer. I’ve seen this movie, I own it, I appreciate Bethany’s story and have even heard her speak before when she came to town, an experience I learned much from and greatly appreciate. I almost didn’t watch the movie, feeling like it would be such a stereotypical thing to do. I tried watching something else, but ended up back on it shortly.

And I’m so glad I did.

Seeing the movie takes me back to 2003, when surfer brands were a trend in our house, especially after I had just come back from a missions trip to Hawaii that summer. This was also the last “normal year,” the official end of my childhood as I knew it. Nostalgia was almost overwhelming, perhaps one more reason I was hesitant to watching it, especially given that I’m dog sitting for a family from Hawaii who are currently in Hawaii. As I revisited Bethany’s story, I watched as the familiar points were made: She has her normal life, she gets bit by a shark, she figures out how to come to terms with it, she learns how to handle her new normal. As I watched, I began to see everything in a new light, I realized that having ME/CFS and whatever else I don’t have a diagnosis for is my “shark bite”, that I’m in the phase of having to learn how to handle my new normal. I am at the point where I decide if I will let this diagnosis hold me back. I get to decide where I go from here.

I found myself thinking,
“Yeah, but, she lost an arm and mine has to do with energy. It’s kind of hard to dance when it’s hard to get out of bed.”

“Yeah, but, she had the immense support of her family.”

“Yeah, but, she was younger, she still believed anything was possible then.”

“Yeah, but, my life is hard, I’m up against so much. I do most of life on my own.”

“Yeah, but, if I try and fail then it costs me dearly. It can cause me to not be able to do the things I’m relying on for income now. This could sink me.”

“Yeah, but.” “Yeah, but.” “Yeah, but.”

When I realized all the excuses I was making in my head, it was all I could do to keep from shaking myself until I snapped out of it. Do I seriously think that losing a freaking arm in a shark attack is “easy”? Am I really that thick? She was thirteen when she lost her arm and was back in the water within a month, having to completely relearn absolutely everything she knew about surfing. Nothing about losing an arm is “easy” by any standards. She had to decide for herself if she was going to let this keep her from what she loved, if she was going to let this dictate her life, or if she was going to do everything in her power to fight through it. She made the decision to fight, and not only that, but to realize the unique position she was now in. That losing an arm didn’t mean her story was over, it meant it took a different turn, and it was up to her to decide if she wanted to make the most of that turn or let the story subsequently end there.

My life has taken an unexpected and undefined turn. I’m at the point where I have to decide if I’m going to let it end here or if I’m going to do what I can to make the most of this. I’m not the only one rowing this boat, and even if I were I know that there are people out there also rowing similar boats that could see my story and apply it to their own lives, just like I did with Bethany.

I had brunch with a dance friend from my old studio today, and she made a really good point. She told me, “I used to read your blog and empathize, and I’d like to think I knew what you were writing about, but now that I’ve experienced it, I understand.

I feel this way towards the movie. I’ve seen it, and I knew the story, I know that the details of the movie aren’t “Hollywood-ified” but stay rather true to the actual events, I’ve even heard it from her own mouth. But I’m in a different place now. The story means more to me now. I understand on a level deeper than before.

If it wasn’t obvious by my recent blog posts, and how much I’ve been writing about coming to terms with illness and all that, I’ve been trying to figure out where my place is in the ballet world now. And I find it fitting that it all seems to have come full circle. I now find myself having to begin again. Obviously, not from the very beginning, but from enough of it to have to rebuild strength and find where I can realistically go from here.

This summer marks the start of beginning again. Of fighting to find my balance and where ballet truly fits into that. Hopefully I’ll be able to attend more classes and have more here to report, but we’ll see how it goes.

I’m nervous, but excited. I really don’t have any idea what to expect, but I’m sure I’ll have lots to say about whatever ends up happening. I hope y’all will still be around to read about it. Thank you for being here. ❤

Recital 2018

I taught four ballet classes this year. I taught ages spanning from 3-9, and it was my first year teaching over the age of 6. This brings in a bit of depth in their training you don’t necessarily see with the younger ones. I wasn’t quite sure what to expect, but now that the year is officially over, reflecting back on it leaves my heart feeling full.

My Wednesday class of 5-6 year olds was my only dance I had on the Friday recital night. Fifteen excited dancers in one small dressing room found a way to jump start my tired heart with their giggles and hugs, excitement absolutely soaking in to my bloodstream just from laying eyes on their lit up faces. They were in the middle of the first half, and they did absolutely wonderfully. I was a bit nervous about the beginning since their piece started with the first faint start of the music, but they heard it and did so great. They wanted to go out and do it again, which was so precious.

Saturday I had my older girls, the 6-8 year old class, first. They were the second dance, and I was grateful. My brain can get full of movements and theirs seems to be the one I space on, even though I know I know it. Thankfully, this only happened in rehearsal and not during the performance. I took a bit of a risk with this class, giving them things that were just a bit out of their depth, but they all rose to it, and I couldn’t be more proud. Even my one dancer who couldn’t possible care less about Ballet and seemed to love to make sure we knew it got out there and did the dance, not getting in anyone’s way as she did it. I’m sad that many of the girls are aging out of the class range I teach, but I am so beyond proud of how much they have grown. Their hunger for more lights a fire in me I forgot to be there. This entire class holds a special place in my heart.

Next we’re my tiny little nuggets, my 3-4 year olds. This is the class that filled me with such joy as they just were unapologetically themselves. The tiniest one, I absolutely couldn’t watch her without having a smile break across my face. They are just so stinking cute and their love and light that spilled out of their tiny bodies filled the room, soaking into the pores of my skin, filling chambers of my heart I didn’t even know were suffocating. I hope I’m able to keep that memory alive in my heart forever. They also did really well, remembering their dance and doing it well while simultaneously just being so adorable I don’t know how the audience didn’t melt all over the place.

My last class was my Friday 5-6 year olds. Many of these girls were my students last year and had already captured my heart. Having them again was a peace and comfort I didn’t know id need this year. Familiar faces looking up at me with smiles now losing teeth as they excitedly told me about it before class. Kids new to me this year quickly joining their ranks of winning my heart over, their dreams and determination to be everything their heart hopes to be inspiring me every week. They got out there and nailed their dance, including the ones that we weren’t too sure how they’d do that day. They all rose and I’m so proud of their hard work.

I was given more flowers this recital than I think I ever received dancing in them, and seeing them has encouraged my heart more than I knew possible. Little reminders telling me that I matter, and that what I do is significant, even if there are days that tell me otherwise. One of the students I had last year gave me this candle, and the scent of it ended up becoming such a comfort to me after the hurricane changed so much of what I knew. I was sad as I watched the wax burn lower and lower, knowing soon I wouldn’t have it anymore. She caught wind and gave me another one this year, and there aren’t words to express my gratitude. It’s the little things, the sweet cards and the hugs around my legs cause they can’t reach any higher. It’s them hugging my neck so tightly when I reach down as they tell me how much their going to miss me or that I’m their favorite. It’s their faces lighting up when I say hello to them as they walk into the theatre, or hearing them whisper, “that’s my teacher!” As I walk by. It’s seeing their bond with my assistants who love them so dearly and genuinely care about their growth as dancers, perhaps seeing themselves in these pint sized ballerinas and recognizing the dreams in their hearts.

I saw some of my students from last year that weren’t in my class this year, which also melted me. Seeing them recognize me, hearing their mom’s excited tones, watching them side stage and seeing their improvement.

These kids are the light that shines through the darkness that can so quickly creep in. I cherish every day I’m able to teach them, and am so grateful to have the opportunity to do so.

I’m still here.

“I miss the joy of dancing.”

Reading those words on a notecard attached to pointe shoes was the moment the documentary “Unrest” had me crying.


Even now, I’m held up in bed, not allowing myself to do anything today besides recital this evening because I have done too much this week and next week begins it all again, and I’m weeping as my fingers stroke the keys of my laptop, trying to find words for this post that has been sitting on my heart with the weight of an elephant for a while now.

I’ve known about this documentary. I’ve had friends watch it and message me about it. But, until now, I’ve avoided watching it. I guess partially because I’m a bit afraid to accept that this is my reality. I thought I had, I thought I was doing well at processing it and what it means to have this diagnosis and the uncertainties that come with it. I thought I was doing well. But I’m not. I have a long road ahead of me, full of uncertainties and bound to be lonely, and frankly that is terrifying.

But, today is ME/CFS Awareness day, which stands for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, which is the only thing my blood work has ever shown without a doubt, which lead to the first time a doctor believed me that something is wrong here. Today, I chose to finally watch this documentary, done by someone I could never thank enough for her bravery to put on blast a condition that more people are dealing with than those with MS by double. Try googling “Cases of MS in US” and see how quickly you get an answer. Now, try googling “Cases of ME in the US” and you’ll struggle. Change it from ME to CFS, and you finally start getting somewhere, but it’s not hard to realize that it is under researched and under funded. We have the lowest amount of funding from the NIH, largely due to the fact that we aren’t believed.

Ever heard stories from back in the day when women had hysteria? They were locked up in mental institutions and labeled as mentally unfit because of the very same condition I struggle with. And it’s hindering everything.

I’ll save you from a soap box of how wrong this is and instead encourage you to watch Unrest on Netflix, as Jennifer Brea so perfectly captures what living with this is like in such a raw and real way it leaves no room for doubt at all. It goes through Jen’s story, as well as the stories of people she has met and the struggles they face as people with ME/CFS, or those with loved ones struggling. It’s a beautiful representation of the millions of voices that go unheard, fading into the void of the condition, ignored by those not forced to see it. It shines light on many of the facets that play into the stigma of this condition and why there is such a struggle to learn anything about it at all. It’s incredible, whether you know someone with ME/CFS or not.

Today is ME/CFS Awareness Day, and I am aware that I have this condition, and that it is slowly whittling away at who I am. If you read my last post you’ll know that I had to quit my full time job due to this illness. It’s been a week, and I thought I knew what to expect going into this, and maybe I knew as much as I could, but what I am learning as I go has left me emotional, to say the least. My entire world is changing. Everything I knew about it is different now, and everything I could hope for in the future is uncertain.

Most people got ME/CFS after some sort of terrible fever. They recovered from the fever, but were never quite the same. As far as I remember, I never got a fever, and even my rheumatologist couldn’t explain how I could come down with ME/CFS without exposure to mono, but really that’s all sort of relative anyway to the fact that so little is known about this disease. She’s the same doctor I saw last month that wrote me off as a hopeless cause she can’t do anything else for. My Primary Care Physician moved to Houston, as is common for this area if we ever have a doctor that actually cares and is worth anything much, so now I’m back to square one. I have to find a new PCP to go any further with anything, but it’s not that simple. I have to find one that will believe me. And if I say too much, they’ll write me off as someone with mental deficiencies causing it all, and if I say too little they won’t see the severity of it all. After all, I look just fine. Not to mention that I also do not have insurance, so all of this is done out of pocket, which is fabulous for someone who lives alone, without a full time job, and who has blown through her savings on all the specialists she’s already seen.

ME/CFS is a spectrum disorder, which means everyone is different in how they handle it and what their bodies can tolerate. It also means that just because you’re one way now doesn’t mean you won’t be something completely different in a year, a month, an hour, or even the next minute.

So while I have had to quit my full time job, as of right now I can still teach. It helps that classes are in small bursts, which makes it more manageable and easier to tolerate. What I don’t know is if this will be the case forever. I have seen such a rapid decline since diagnosis, and even in the six months before that when I first began noticing symptoms that I know better than to expect to be back to what I used to be. And honestly, if I were able to just stay where I am currently, I would count that a massive win, but even that seems unlikely. It’s hard to know what to expect, not only because of how little is known about this disease, but also due to the fact that we literally have no clue how I contracted it. I’ve never had mono, I rarely get “normal people sick,” the only thing I can actuate it to is a genetic condition that doctors also don’t know much about and are too afraid of how little they know about it to diagnose me with. Except for my chiropractor. He is 100% certain I have hEDS, but I don’t believe he has the diagnostic authority to say so. What he does have is the power to sign off on a disability parking placard, and right now that is everything. I’m trying to mentally prepare myself as best I can for the inevitable people who will tell me I shouldn’t be taking up the spot from someone “who actually needs it” and if I’ll just walk away or if it’ll be worth trying to explain to them that I am one of those people even if I don’t look it and that this is actually mine, but I’ll cross that bridge when it comes.

One thing I am absolutely incredibly grateful for is the fact that I didn’t hesitate in taking those first steps that lead me on this path of dance back before I was sick. I accomplished more in those five and a half years than I ever thought would be possible. And even if I never improve past where I am today, those memories are real. They stay with me. I know I did that and nothing can take that away from me. I won’t move forward in regret of all the chances I didn’t take, but have pride in my heart that I faced the fear of the unknown and rejection and took the literal steps to make my dreams of dancing come true.

I am also grateful for the people I do have in my life. Having a chronic illness is a freaking lonely road that no one can prepare you for, especially when you’re in the phases of coming to terms with the fact that this is now your reality, whether it’s in the beginning, or you’re deep in the trenches and another wave of it washes over you. It makes you feel guilty as hell that you’re not who you used to be, as well as a whole heap of other emotions I’m still a little too proud to admit. Maybe I’ll lose some of that pride as this goes on, but just know that it freaking sucks and it’s something I wouldn’t wish on my worst enemies. I have friends that are forgiving and understanding. Friends that offer to help me with absolutely trivial tasks I can no longer do on my own. Friends that don’t hold it against me when I have to cancel plans again. Friends that are in the same boat and act as a support as we navigate these rough seas together.

Quite uniquely to this generation, I have friends online, and these have to be some of the dearest of all. On specifically has a whole laundry list of chronic illnesses of her own, in and out of hospitals, and still finds ways to dance when she’s able. To say she inspires me is the least of words I could find, but I don’t know if there are any adequate enough to express what having her in my life means. She’s the one who most recently told me about what watching UnRest meant to her and how she empathized with me. Honestly, I felt unworthy, as I am truly so fortunate to have as much health as I do. I can still get out of bed most day, I can still teach, I can still live alone, I’ve never been hospitalized for this, I’m still able to pay my bills and lead a mostly normal life. But the greatest gift she gives me is that of her story. She shows me that even in the darkest of times, we can still find hope. That our story still matters, that we still matter. That we have a voice and it’s our choice whether or not we use it.

I’ve been so hesitant to write as much as I do about my health issues. I don’t want to disinterest my audience that came for the dancing and now find themselves with this person who isn’t what they signed up for. But instead what I’ve found is my readers have increased. I’ve found other dancers also dealing with the same or similar illnesses, as well as the struggles that come with it. I’ve found this entire network of people out there navigating the waters as I am. And that is truly a gift I never expected, one I can never repay.

I still struggle to believe that this is my reality. Ever day it seems to become a little more clear, and I know I still have much to discover and process with it all. I’d be lying if I said I wasn’t still weeping as I’m writing this, and I never used to be a crier. But this is my reality. This is my story now. This is who I am and the lot I’ve drawn and it’s up to me how I choose to handle it.

I choose to use the voice I have. I choose to make the most of it. I choose to feel everything that comes with this, to push through and be as raw and real as I can about what this new reality is like. If not for myself, then for the person out there finding themselves in a similar boat, weeping over the dreams they’ll never get to achieve, struggling to find the strength to begin thinking about forming new dreams. I choose to do my best to be to someone else what these incredible women have been to me.

Jennifer, Bailey, thank you for being shining examples in such a freaking dark world. I’ll never be able to thank you enough.

If you’d like more information on what you can do to help the #millionsmissing as they seemingly disappear into the void this illness creates, please check out the website here.

If you’d like to know about my friend Bailey and her story, please see her instagram here.

And please, take a moment to look around you. Notice those simple things you have, those day to day moments, and cherish them. Then, take a look at your life. See it for the beautiful story it is, even if it’s nothing like you expected it would turn out. It’s your story. The pen is in your hands. Please, please, find the courage to keep writing. Your story is great, and it’s up to you to write it.

You matter. You are seen. You are cherished.